Jeffrey Modell Foundation Fulfills Commitment to Screen Every Newborn Baby For "Bubble Boy" Disease

NEW YORK, May 16, 2016 /PRNewswire-USNewswire/ -- After over a decade of advocating for implementation of Newborn Screening for Severe Combined Immune Deficiency (SCID), the Jeffrey Modell Foundation (JMF) has achieved a great victory – all 50 states will now include SCID on their newborn screening panel before the year's end.

SCID, often referred to as "Bubble Boy Disease," is the most serious form of Primary Immunodeficiency, in which infants fail to develop an immune system.  Undetected and untreated, the infant may die before their first birthday, but with newborn screening, they can be properly identified, diagnosed, treated, and in many instances cured!  This life threatening condition, including other T-cell disorders, affects 1:33,000 births in the United States.

"Congratulations to the Jeffrey Modell Foundation for their victory in improving children's health after decades of tireless work," said Congresswoman Nita Lowey, Ranking Member of the House Appropriations Committee. "I was honored to work with the Foundation to support CDC funding to educate physicians and increase awareness of Immune Deficiency.  I am pleased that newborns nationwide will now be screened at birth for Severe Combined Immune Deficiency (SCID), so vulnerable infants will have the best chance to live long, healthy lives."

"Screening newborns for Severe Combined Immune Deficiency (SCID) is critical to ensuring the health and well-being of our children and I am thrilled that Missouri is now the 50^th state to implement these assessments. Fred and Vicki Modell have been tireless advocates for screening newborns and this milestone would not have been possible without their efforts. We must continue to push for more research and education funding to fight this disease and make a difference in the lives of so many children and families who are affected by it," said Congresswoman Rosa DeLauro (CT).

JMF Co-Founder, Vicki Modell shares, "It has been an extraordinary journey, but now every baby born in the United States will be given the opportunity for a full and healthy life."

• 2007 – JMF met with the Centers for Disease Control and Prevention (CDC), and together created a Physician Education, Public Awareness, and Newborn Screening program.  The program was immediately successful and described by the U.S. Congress as "a model of public-private collaboration."
• 2008 – In collaboration with the Wisconsin State Laboratory of Hygiene and Children's Hospital of Wisconsin, JMF funded and launched the first pilot Newborn Screening Program.  Starting with 10,000 babies, the pilot developed protocols to test, identify, and treat SCID.
• 2010 – JMF addressed the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children in Washington, DC. The Committee voted the same day to recommend adding SCID to the core panel of newborn screening tests. Health and Human Services Secretary Kathleen Sebelius approved the recommendation shortly thereafter.
• 2011 – JMF began to reach out to every state Public Health Commissioner and Directors of state newborn screening laboratories encouraging them to implement the approved recommendation.
• 2012 – Frustrated with the slow pace of implementation, JMF decided to coordinate and jumpstart the effort themselves and announced a multi-million dollar commitment to screen every baby born in every state for this life threatening condition.

In the years since, JMF has continued to support and encourage every state to implement this life-saving test; funding state pilot programs and providing educational materials to further prove its importance.

Now in 2016, the Jeffrey Modell Foundation's commitment to implement mandatory Newborn Screening for SCID within every state, as well as, the Navajo Nation, District of Columbia, and Puerto Rico is finally complete.

About Jeffrey Modell Foundation
Vicki and Fred Modell established the Jeffrey Modell Foundation in 1987, in memory of their son Jeffrey, who died at the age of fifteen from complications of Primary Immunodeficiency -- a genetic condition that is chronic, serious, and often fatal.  JMF is a global nonprofit organization dedicated to early diagnosis, meaningful treatments and, ultimately, cures through research, physician education, public awareness, advocacy, patient support, and newborn screening. The Jeffrey Modell Centers Network includes 602 physicians at 250 academic institutions, in 206 cities, 84 countries, spanning 6 continents and growing. For more information about PI, visit www.info4pi.org or email the Jeffrey Modell Foundation at [email protected].

Media Contacts:
Vicki Modell, Jeffrey Modell Foundation, (212) 819-0200
Fred Modell, Jeffrey Modell Foundation, (212) 819-0200

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SOURCE Jeffrey Modell Foundation